Andrew and autism

I've been reading more on autism. And doing so has made me want to write more on autism. In fact, as I write this, dinner is boiling away on the stove, the kids are parked in front of the TV and I've warned Dave that I am going into hiding because I am dying to write about autism.

I've been hesitant to write about autism for several reasons. One major reason is that I worry about my writing's effect on Andrew. I worry about him finding these entries and being upset by them. I worry about his future classmates finding these entries and teasing him. I'm not sure what to do about that right now, but it's definitely on my mind.

I'm also worried about the various responses people will have. I worry that people think that I'm trying to find something to blame Andrew's sometimes-strange behavior on. I worry they think he's not really autistic and that I am exaggerating, trying to cover up my inept parenting. But I also worry that people see Andrew more clearly than I do and what is remarkable and insightful to me seem dull and obvious to others. Basically, I feel vulnerable.

But, I really, really want to do it. I want to face this. And I want to face it publicly. I don't want to wonder what people are guessing anymore. I just want to share and talk and write and be out with it already. Plus, I've heard from all kinds of readers about struggles they've been having with their kids, which further motivates me to move forward.

Is Andrew autistic?

Officially, no. He's not. I've been talking more and more with his Developmental Pediatrician about this. The schools that we are looking at for him, the schools that she is recommending, are for kids with high-functioning autism. She is hesitant to diagnose him, she tells me, because he's borderline. And lots of kids that exhibit characteristics of autism as young children, get 'better'. The funny thing is therapy often works. She tells me she's diagnosed kids that within a few years don't exhibit the same signs at all, and then she wonders why she diagnosed them in the first place.

We're meeting with her again soon. His Education Plan is up for review in a few months and right now he's listed as "speech disorder", which just doesn't fit at all. And might not be enough to get him into the schools that could really help him. And so she's weighing the pros and cons of giving him a more specific diagnosis.

But really, is he autistic?

I don't know. Some days I look at him and don't see anything at all that's atypical. Other days I can't believe how autistic he is. And his teachers and therapists have reported the same thing. Some days he's here. He's with us. He's in the game and ready to play and batting home runs. Other days, he's not. He's in his own world. He's in his head and mindlessly repeating lines from movies, and saying nonsense words and he can't hear anything I say. It's such a wild variance that I've tracked his diet, his sleep, his activity levels to see if I could find any clear patterns. What makes him retreat into himself? And how do I get him out?

Right now, it helps me just to think, "yes. he's mildly autistic." Oddly, it keeps me calm and helps me work with him more constructively and patiently. It changes my approach and makes me more effective.

Though, I have to say, that can be really hard.

I think that Andrew's 'borderline' diagnosis has it's own set of hardships for me. A lot of people don't see anything different about Andrew at all. But at this point, he can't learn in a typical classroom. It's just too overwhelming for him right now. And so the schools see his differences clearly. I often feel like I am juggling back and forth between people that see and people that don't. And that often feels like a tricky position to be in and one that I'm learning to navigate.

And maybe Andrew's pediatrician is right. In a few years, maybe the things holding him back now, won't be holding him back anymore. Maybe a diagnosis wouldn't fit at all and we'll be scratching our heading wondering why we ever thought he was autistic in the first place. But, I feel like, even so...even if Andrew gets to the place where the rest of us are...where he learns to cope with what is hard for him in more socially acceptable ways...and his language and social skills catch up..even so...right now people are looking at him wondering if he's autistic. Even if in the end, everyone decides he's not, this is still really happening. People are looking my son trying to decide if he's autistic. This might end up being just a brush with autism...but still...it's a brush with autism...and for me, it's having a profound inpact.

I'm reading Not Even Wrong by Paul Collins. It's a book I tracked down after hearing Collins interviewed on NPR. It's been really, really, really good for me to read it. Honestly, there is a lot about autism that I love. Crazy, right? I mean, when I read these cases of 'autists' with their strange obsessions and quirks, it makes my heart sing. There is something absolutely endearing to me about quirky people. I love, love, love, love, love them.

And so I find myself in this tangled mess. Loving and resenting the things that make Andrew atypical. Feeling so incredibly lucky and feeling heart-pounding fear... at the exact same time.



And if you made it the end of this post: congratulations! ;) Perhaps the photos of Mississippi Mud Bars powered you through. These babies were fantastic and found in Passion for Baking, of course.



Andrew sure loved them.